Discover-NOW Citizen Advisory Group (CAG)

Discover-NOW, the Health Data Research Hub for Real World Evidence, aims to revolutionise the way health data is used responsibly for research into treating and preventing disease.

Discover-NOW will only realise our ambition and the potential benefit to millions of people if we have the support, confidence and trust of our communities. We are committed to engaging patients and the public in a meaningful way. We are therefore proud to have partnered with OneLondon Local Health and Care Record Exemplar (LHCRE) programme which carried out one of the UK’s most progressive large-scale public deliberation events on the use of health and care data.

Citizen Advisory Group

Discover-NOW is committed to ensuring that all our current and future ways of working reflect and embed the recommendations made by the public through this deliberation. This is particularly evident through the formation of a Citizens Advisory Group (CAG) that is forming part of the Hub’s governance structure and future decision making and policy development.

We have partnered with Ipsos MORI as CAG design and delivery partners and together are advancing this approach with participants reflective of the north west London population. The group are coming together over the next year in a set of mini-deliberations (similar to the OneLondon Citizens Summit) to explore, discuss and deliberate key dilemmas facing the hub to help inform our next steps.

CAG steering group

To ensure that the deliberation process, content and direction is authentic and balanced Discover-NOW have set up a virtual CAG steering group to underpin this work in an advisory critical friend capacity. This group will be providing challenge and scrutiny through regular review meetings throughout the next year.

Name

Organisation

Role

Alice Dowden

Health Data Research UK

Public Engagement and Involvement Officer

Avi Mehra

IBM

Associate Partner

Barrie Newton

Public

Citizen member

Clare Mortimer

IBM

 

David Porter

IBM

 

John Norton

Public

Citizen member

Kavitha Saravanakumar

North West London Collaboration of Clinical Commissioning Groups

Associate Director of Business Intelligence

Sanjay Gautama

 Imperial College Healthcare NHS Trust

Caldicott Guardian, Chief Clinical Information Officer and Consultant Anaesthetist

Taj Sallamuddin

Information Governance Services/ Imperial College Health Partners

Data Protection and Information Lawyer. Data Protection Officer for ICHP

Tom Binstead

Telstra Health – Dr Foster

Director of Strategy and Analytics

First mini-deliberation

The deliberation consisted of two virtual workshops in February 2021, comprising c40 people recruited to reflect the North West London population. Each workshop lasted three hours and included a combination of informative expert presentations and moderated group discussions in which smaller groups of around six participants reviewed stimulus materials and deliberated their views, experiences and expectations.

These first two workshops explored the deliberation question of: “What conditions need to be in place for non-NHS partners (universities, commercial organisations, charities) to have access to health and care data in a trusted research environment?”

Discover-NOW does not currently provide this type of access but in developing our Trusted Research Environment we wanted to explore public expectations in order to shape policy that will enable this to happen in the future.

John Norton Citizen Partner, Discover-NOW 

“I am really proud to be a Citizen Partner of Discover-NOW and be part of designing and delivering such a progressive involvement and engagement approach. Through our work we are delivering real impact for not only patients and the public, but for the research community as a whole.” 

Results

In March 2021 Discover-NOW published a report setting out the recommendations and conditions formed by the North West Londoners at the CAG, including how and why they reached these decisions.

Areas covered included:

  • Expectations concerning access
  • Governance
  • Access Criteria
  • Expectations concerning controls
  • Linking with other Trusted Research Environments
  • Ensuring safe outputs
  • What data can be accessed

View the full report

Next steps

This work is already directly influencing how data is used and accessed for research purposes in North West London. The report and recommendations have been shared and were well received by the Discover-NOW Board and there was unanimous support to embed and align to the recommendations. Specifically:

  • Refining the criteria for data access requests to ensure that data access requests reflect what is important to the CAG
  • Reviewing the membership of the NWL region’s existing data access committee to ensure it reflects the recommendations of the CAG.
  • Steering the development of its new Trusted Research Environment and how this can be potentially safely linked with other datasets.

This work is viewed as a huge step forward in influencing and shaping how non-NHS organisations will access depersonalised data in a trusted way. As such, these findings are also being shared on a larger scale across our networks in North West London and all the other Health Data Research Hubs nationally.

The next Citizen Advisory Group workshops are now due to take place on:

Wed 21 April, 18.00 – 21.00 – Workshop One
Sat 24 April, 1.00 -13.00 – Workshop Two

Contact

If you would like to find out more about this work please email us.